My name is Lysa Dilley-Wrote. I created the blog titled “Exploring Lungs for Lysa” at www.lysadilley.com. It is a collective, proactive conversation to help you gain insight into where I’ve been, what happened, and what it’s like now. My blog originated as my first English 101 writing assignment, in my first semester of college, January 2015. Six weeks into the semester I got really sick. I spent 21 days in the hospital and was out of school for the remaining nine weeks of classes. With the help of my classmates and amazing instructors, I finished my first semester of college with a 4.0 GPA! While I was hospitalized, I went from “not being sick enough” for double lung transplant surgery, to thinking, “oh my gosh, I hope I don’t die!” My blog became so much more than just an English assignment! It became my lifeline to friends, family, and followers. It was a creative outlet to share my experiences. My stories are profound, powerful, charismatic, and engaging. My favorite topics to write about are being positive in a negative world and living your dreams despite extreme circumstances. Hang on, it’s going to be a wild ride!
Warning! The video presentation below is intense, over the top, and motivating. It has some strong language and could be considered extreme…
But so is my life.
Video Courtesy of Muscle Factory
Welcome to my world! I believe that every day of life is preparation, experience, and a new opportunity to not just exist, but to excel, fiercely pursue goals, and enjoy life despite any obstacles. My “focus on the finish” has been transformed from the competitive stage to being ready for double lung transplant surgery.
During the process of pressing on, why should we settle for “ordinary” when we can have “EXTRAORDINARY?”
Looking back, when I was a kid and people would ask, “What do you want to be when you grow up?”, my answer was always the same, either a princess (of course), or a Zoologist. Later, as high school graduation approached, I became painfully aware that I was NOT a big fan of school, and the only “animal” I was concerned with was being a BEAST! At 17 years old I saw a magazine called “Muscle and Fitness,” and on the cover was a picture of the winner of the IFBB sanctioned Ms. Olympia Professional Bodybuilding Competition– Cory Everson. I decided, at that moment, I wanted to be just like her–a champion! In fact, Corinna Everson was a six-time winner of the Ms. Olympia competition! I jumped into the world of bodybuilding and fitness with both feet! It became my passion, my life, and my world!
My Bodybuilding Transformation
The last words spoken to me by my fellow gym rats were, “You were on a roll! First place in every class, winning the overall, and getting your pro card! What happened?!”
This is why life dramatically changed for me.
In 2003, at the age of 37, I was diagnosed with a rare, genetic liver/lung disease called Alpha 1 Antitrypsin Deficiency. At my diagnosis, my total lung function was 32 percent. There is no cure for my disease, and I will need a double lung transplant in order to stay alive. As my parents and I sat in that examination room, shocked to our core, I broke the silence and asked the Doctor, “Just tell me right now, what do I have to look forward too?” His response was, “Well…nothing.” My parents were devastated! Me? I had bigger plans. I may be 100 pounds soaking wet, but I am a BEAST! I’ve been beating odds since the day I was born, three months premature and weighing one and a half pounds. This diagnosis was going to be another odd that I was going to beat! I continued to train and compete until 2010 when my physical condition hit an all-time low, and honestly, so did the hope and excitement of pursuing the dreams I had for my life. I continued to work as a Merchandising Execution Associate (MEA) at Home Depot stores until 2015, but my life was dramatically different.
My life, between 2010 and 2015, was a difficult period of change physically, mentally, emotionally, and spiritually. Physically, I could no longer train the way I was used too, and that meant no more trophies. I renamed my new workout facility, “Sweatin’ With The Oldies,” because let’s face it, everyone there was at least 20-30 years older than me, and doing more work than me. In my body, I wake up exhausted and stay that way all day. My lungs work so hard to oxygenate my body that my resting heart rate stays around 100+ beats per minute (BPM). I had to start bringing Mean Green (my oxygen tank) with me everywhere I went. Physically, that is NOT an easy task! Mentally, I had to look deep inside, under that hard-muscled exterior, and I was terrified! I’d been hiding behind my body for more than 20 years for a reason! Emotionally, I had to prepare myself for what I would find on the inside of myself, and how I was going live without the only life I had known. Spiritually, I HAD to get used to trusting God, and as a last resort, I learned to pray. REALLY PRAY, and not just a thankful blessing, voiced at breakneck speed before a meal, when other people were around. I realized that I was NOT in control of my destiny or life and it was time to have a talk with whomever or whatever did. I had to find the puppeteer who was controlling the strings of my life! I considered “religion” but realized it was a “relationship” that I was looking for. At least this way I would still have SOME sort of choice besides “free will” and being told what to do.
Currently, at 52 years old, with a lung function of somewhere around 15%, I find myself in a weird place between what I used to do, what I want to do, and asking myself daily, what am I realistically “capable” to do? Most of the time I teeter the line between enough and too much, and end up sick in the hospital, or at the very least, in bed exhausted for a week. I’m a beast, but I had to re-evaluate and change my thinking, my goals, my dreams, and my life! I live at a snail’s speed, but in my mind and soul, it’s still balls to the wall, and at the speed of lightning! Some habits die hard.
“Why is there a rhinoceros on the back of your ‘Lungs for Lysa’ t-shirts?”
I LOVE rhinos! I am a walking encyclopedia of facts and information about all five species of rhinoceros! I have great respect and passion for them because their lives somewhat resemble my own. They are strong, powerful, and almost extinct! Also, A BEAST! On January 2, 2015, I had the privilege to experience my childhood dream of being behind the scenes at a zoo, and being up close and personal with my favorite animal, a rhino. His name is PJ, a one-horned Indian rhino. He was a juvenile, and so small compared to how big he would be as an adult. I got an hour alone with two zookeepers and this magnificent creature!
After one hour with the two zookeepers, and a million questions later, I learned that if I ever wanted to work at a zoo, specifically with rhinos, that I would need a bachelor’s degree in biology, with a minor in animal science. I flew home to Maryland the following day, and three days later I was enrolled in my first semester at the community college! An old spark had been reignited and a new goal came into view! A COLLEGE DEGREE! I wasn’t sick enough at the time to be listed for transplant, so my plan was to get a degree, then my transplant, and then my dream job! That “relationship” I was talking about? It was with God. THIS was the moment that I realized he had a sense of humor! Little did I know that six weeks into my semester I would become extremely ill. I was finally sick enough to be listed with UNOS (United Network for Organ Sharing), and after a decade of being in Johns Hopkins lung transplant program, they decided I was non-compliant and would reconsider and reevaluate listing me after six months. After jumping through their hoops like a circus monkey for the next seven to eight months, in November 2015, they told us that I wasn’t a “good fit” for their team and kicked me out of their program. It was a devastating blow for my family, my extensive support network, and me.
Two months later, on 1/6/16, I was SO fortunate to be offered a chance to join the Lung Transplant Program at INOVA Fairfax in Virginia. It took me six months of additional testing and evaluation. I had Johns Hopkins opinions and reports arrive at the new center before I had my first appointment. Each appointment and evaluation at INOVA were intense! After all, it was my word against the 4th best transplant hospital in the country! I had to sell myself like a used car, and turn every negative they said about me into a positive. I admitted to everything Hopkins said with comments such as, “Yes, that really happened but what matters is where I am now, 30 years later. I’ve worked my butt off to get where I am today and that says a lot more about my potential for being a good transplant candidate than the person I was 30 years ago.”
On 6/11/16, my brother’s birthday, I was officially listed for a bilateral lung transplant on the transplant waiting list with UNOS at INOVA Fairfax Hospital! Through all of this I remained in college, I had a fairytale wedding, and I am still chasing my dreams and eating goals for lunch, despite being chronically ill and fighting for every breath! During flu season, spring and fall semesters, I take online classes. During the summer I have the time of my life! I get to attend class ON campus! Making new friends, having fun. Socializing with anyone who ISN’T medical staff is the highlight of my year!
My stories are intended to be a source of education, awareness, and discussion, and most importantly a plethora of inspiration! I refuse to be defined by my disability, and I want people to look at me and say, “Because of you, I never gave up!” I want my stories to be a breath of fresh hope. In the future, after receiving my double lung transplant, I will have a second chance at my own life, and I wish to make it possible for rhinos and people who are struggling and facing “extinction,” to have a second chance at life as well. I strive to be a living example of how to laugh in the face of adversity. As long as I am alive, with or without a transplant, I will continue to thrive and live the best life ever, despite any and all extreme circumstances.